IF Members Training Understanding Fundraising to influence Policy and Actions


Background and rationale

This training for IF members, you don’t want to miss!

International organisations such as the European Union (EU), the United Nations (UN) and World Health Organization (WHO) and others have a significant role in shaping national and regional policies. Advocacy towards international organisations plays a key role in IF’s policy and advocacy work. However, although international federations such as IF are essential to raise the profile and impact of spina bifida and hydrocephalus (SBH) advocacy on the international level, national and grassroots advocacy is a vital component of achieving global change. International institutions are composed of national policy makers and international actions do not only influence national policies, but national advocacy in turn also influences international actions.

It is imperative to have the push for change come from the national level and the voices of the SBH community be loud and visible in these actions, thereby advancing the rights and needs of persons with SBH.

However, IF acknowledges that its members as the associations representing people with SBH in different nations may have limited experiences and knowledge to initiate an advocacy campaign and outreach to policy makers at the European and international level. This was also reflected from the members’ feedback from IF’s activities in 2021 which identified the need for advocacy for primary prevention of spina bifida as a high priority concern for the SBH community.

Taking this into consideration IF understood its role to strengthen the capacity of IF members through thematic training on policy and advocacy as the umbrella of European and non-European SBH associations. IF provided thematic training for IF members focusing on policy and advocacy from the national level to have an impact on the international level with mandatory fortification of folic acid of staple foods  for the primary prevention of spina bifida as an example.

Overall objectives 

The annual thematic training on policy and advocacy aims to:

  • learn about the key concepts of fundraising;
  • gain knowldedge on how international organisations play an important role for the advancement of the rights and needs of the SBH community;
  • understand the importance of how international actions have an impact on the national and local level and vice versa;
  • obtain guidance on how national level advocacy can influence actions on the international level;
  • discuss the key issues and strategies to overcome barriers to initiate advocacy work and how to reach out to policy makers at European and international levels.


As this training is aimed at IF members, it is vital to take the diverse needs of IF members into consideration. Gathering members feedback from IF’s activities in 2022 and from IF members meeting in August 2023, IF identified fundraising and advocacy as two of the high priority concerns for the SBH community. It was also highlighted that members showed concern and challenges with initiating advocacy work and reaching out to policy makers with limited resources. With that in mind, IF chose fundraising and UNCRPD principles as the basic elements for advocacy where IF members can learn basic tools during the IF members training.

The annual thematic training for IF members was titled “Understanding Fundraising to influence Policy and Actions” and is divided in three training components: (i) Fundraising; (ii) UN-CRPD; (iii) Coming-back practical session.

Training Theme: Fundraising and Human Rights Advocacy
Trainer(s): Magdalena Verseckas, An-Sofie Leenknecht and Shantal Martis
Participants: IF Members
November 8 3PM CET
November 22 3PM CET
December 6 3PM CET
Location: Online -Registration required!

Are you interested? Don’t miss the deadline of October 25 2023 to register at [email protected]